My thoughts on living with lipedema and lymphedema…and other stuff


(Lack of) initiative

I was watching TV last night, and a commercial came on—one of those Big Pharma pitches for some medication that would miraculously clear up whatever persistent condition from which you are suffering—and something about it struck hard. This was the one where the lady has thyroid eye disease and has lived for most of her life wearing dark glasses and avoiding cameras, but all of a sudden, hey! she asks her doctor about this medication she heard about, the doctor prescribes it, and suddenly the lady has a life without protruding eyeballs and can show her face to the world.

The thing that impressed me so forcefully was the specific wording of the dialogue: The patient heard about the medication, went to her doctor and asked about it, and then the doctor prescribed it. In this one phrase, some advertising writer has just summed up everything that is wrong with our healthcare system.

Why, if this woman had had a persistent condition for many years running while there existed a medication specifically designed to fix it, was the woman having to ask the doctor for it? Why wasn’t the doctor caught up on the function of this medication and saying to the patient, Hey, I received some exciting information from Big Pharma about this drug that will change your life, let’s try it, shall we?

The truth is, our entire healthcare system is set up to be passive. It was designed with the old saw, “The squeaky wheel gets the grease” in mind. Unless we complain and do it loudly, frequently, and persistently, no one is going to offer us care. And even when we do decide to advocate for ourselves, misogyny, bigotry, or myopia or an insufficient allocation of time and resources can all be the enemies of the good.

I could talk at length here about how various doctors have pushed aside my concerns, ignoring or belittling them. About how they have practically called me a liar or a crank to my face. About how only a few kind and professional people who know their jobs and do them have made a difference for me, but how, if that difference had been made a year earlier by some other so-called professional, I would not have had to endure various symptoms and problems that have made life exponentially more difficult than it ever needed to be.

But there’s not much point in airing grievances where they won’t get a hearing. I’m not looking for sympathy here, I’m craving some accountability. So, instead, I have decided to directly confront a couple of the people who sneered, rebuked, failed to listen, took no action, and sat smugly on their precious reputations, and see if there is still any avenue by which I can access what remains of either their ethical duty or their professional pride to say to them, “Do better” and have it heard.

I’ll let you know.

One response to “(Lack of) initiative”

  1. I have noticed the very same thing in Big Pharma ads – great new chemical breakthrough – ask your doctor now. If I had been seeking treatment for an ongoing serious condition, why wouldn’t he/she have pushed it on me already?? I was having problems with side affects with my diabetes pills, mentioned that to my Endocrinologist and she put me on Ozempic. And everything is fine now. Granted, I had to tell my doctor about the issues I was having, but she got right to it. I hadn’t even thought about Ozempic. Always be vigilant – don’t worry about offending the overpaid medical experts. Speak up and become your most effective advocate.

    Liked by 1 person

Leave a comment

About Me

I started this blog to talk about a genetic, fibrotic fat-storing (some say autoimmune) condition called Lipoedema, which is something I began to experience in my 60s, although some see early onset at puberty, or post-pregnancy, or at menopause. The other “L” condition from which I suffer is Lymphedema, as a common secondary effect of the fibrosis that blocks lymphatic drainage. Despite the fact that one in 11 women suffer from lipoedema, most doctors have never heard of it, so on top of the pain and embarrassment of this extremely obvious malady, millions of us are out there being fat-shamed for a condition that isn’t contingent on diet or exercise for its growth. This blog was intended to share my reactions.

I have, however, reserved the right to discuss “other stuff” here and, increasingly, since January 20th, 2025, that is politics, because what else, after all, are we legitimately obsessed with in this age of fascism in these United States of America? So while the “theme” of this blog may be confusing, it is my blog, where I can talk about whatever I wish. You are not constrained to read the parts you don’t like. But I feel compelled to write about them.